I have been reading posts here but never posted as I had nothing to offer really until now. I've appreciated the advice and tips found here and the supportive environment. This post mostly may be helpful to those who have not yet gotten the diagnosis of SS but are exhibiting symptoms.
Firstly, it is not myself, but my daughter who has been suffering, for about 4 - 5 years, she is just turning 25. She has had severe dry eyes along with dry mouth and throat, painfully dry, and has had few full night's sleep in years from always waking in pain. Nothing she tried would give her relief for more than a few hours at most.
After all sorts of doctors and tests, there was never any conclusion to the cause, but she was told repeatedly it looked like Sjorgrens or Lupus, despite the lack of any other symptoms or indications on the blood tests of which there were many. She was encouraged to see a rheumy, yet had the toughest time getting a referral. It's a long long story all the docs, tests, and things tried, medical and natural, so for brevity's sake I will skip the whole tumultuous tale.
While waiting for the referral to the rheumy to come through, we started looking at the hormone question again more closely, despite the dismissal from the endocrinologist. It occurred to me since testosterone was successful with dry eye in older women, there could be something to the hormones, and she has a history of difficult menses and indications of PCOS. Also dry eye is common in pregnancy as well as on birth control pills. Since testosterone is so difficult to obtain for women, I thought why not try some progesterone cream, so she did. Why not indeed, she tried so many things already to no avail.
Oh my. Right away she noted an increase in saliva and was able to sleep through the night. Still needed morning eye drops but none throughout the day. This continued to improve. Now that it has been a full month, it clearly has been the solution for her. It makes perfect sense now after thinking it through, as during ovulation, the body produces moisture to hang on to the egg, and progesterone becomes the dominant hormone at this time. With just a daily dose of progesterone cream, her moisture has returned, like 95%. She was able to stop it for a week too, as it's best to try and mimic a natural cycle, and had no resurgence of dryness that week. Really it has been miraculous!
After years of suffering, including the terrible financial drain, all it took was a cheap bottle of natural progesterone cream. That not one doctor had thought to consider a hormonal cause is shocking really. The endocrinologist and the opthamologist surely should have been aware of the connection and had given it some consideration. There are some scientific studies published years ago. Really wish we'd had come upon the solution much sooner as real damage was occurring with dental issues and her meibomian glands. I will refrain from ranting, but these docs could definitely use some education so perhaps they can help the next person. This "no cause, no cure" message the doctors were expressing was just unacceptable. She was so exhausted and worn down though, she was ready to give up.
Anyway, I wanted to reach out here, as if this could help even just one person it is certainly worth mentioning. Not going to be a solution for everyone of course, many of you have the definitive diagnosis which she had not obtained at this point. All we had was the doc's best guess and they kept pointing to autoimmune. Clearly it's been hormone's all along for her and relief found sitting on a shelf at the store.
I pray for all of you here struggling with this condition and hope that you find relief. Leave no stone unturned in your journey. As they say, it's always found in the last place you look.